The PSP seems to be taking my wife down strange paths . She hates me being on th e telephone to anyone and will always try to call me and interrupt the call - she doesn't like me talking to people and she doesn't like me going on line or the idea of the forum which is why I tend to come on after she has gone to bed or before she wakes up . It is a kind of paranoia . She is getting more possessive by the day and is constantly demanding I stay by her side and if I am in the kitchen or doing the washing or paying bills she calls out saying she needs to talk to me but when I get there she says she doesn't know what to say . If I am doing something she asks why I can't do it sitting next to her.Its getting very wearing and claustrophobic . If I go and wash up the lunch things she accuses me of wanting to get way from her. Even now it is 10.50 and she has been in bed since 9.45 I made the mistake of not going upstairs but sat in the kitchen to read the paper and type this and she has come out of her room and called out to see what I am doing.I have now gone up "to bed"and she has settled down so I can carry on . I don't know if it is some kind of insecurity but I am finding it increasingly difficult to deal with. The Community Matron has suggested she goes for a half day at the hospice but she flatly refuses unless I go too and I know that if we do go and I am determined to get her there , that after a couple of visits she will still resist my leaving her there for a morning . If I try to confront her over any of this behaviour she bursts into tears and says she doesn't understand what is happening to her and then I am just putty . Does anyone have similar experiences ? And any advice on how to deal with it would be most welcome as I shall probably be not putty but potty before too long . Georgepa
Sorry I left party early -problems - PSP Association
Sorry I left party early -problems
This is my situation exactly!! My husband was always high maintenance and hated when I was on the phone and now it is totally impossible. He follows me trotting behind me asking questions and not understanding and behind him my three dogs. If he cannot see me for a few mins he starts screaming "Jill" "Jill" "Jill"..which I understand but also is impossible to tolerate. Before he was ill he was a writer and spent much time alone in his study reading and writing...or on the road to different colleges. I loved having my own life secure in my alone-ness and then enjoying him when the two of us were together again. I had been an only child and loved my privacy and space.
So now I have this rather unpleasant demanding terrified old man following me from room to room to room and screaming my name. One of the reasons we moved to Costa RIca was because I really know what he was heading for and also my father with Parkinson's disease had suddenly moved in when my mother died. I needed to stop working to care for both of them, and then there was no money....help was $20 an hour heating the house alone took $500 a month. I knew we could not live in the USA and moved us quick quick to CR after selling our house just before the market crashed. It was the best move I made. I started out here with two wonderful Costa Ricans who were untrained, spoke no English and the young woman had never been off the coffee farm. But they were amazing and worked for us a higher then usual salary $5 and hr and I gave them a great benefit package like they've never seen in CR.
Now the man has continued working for us after my father died.. He had recently divorced his wife and built us a beautiful addition to our modest home for himself and his children. Without him I would be insane, dead, or ???? So we pretty much divide the care and he does man stuff around the house. The deal is I give him free room and board plus $800 a month salary. So during the week I go to town sit and do my own stuff in the coffee shop for about 3 hrs a couple times a week. During the day he spells me but Bob can still and does do the same old clinging jealous behavior. But I set limits. I've need to for survival. I am not going to allow him to pull me into an early grave with him and he surely will if I can't set limits. It's been hard for me to not answer when he calls for me, but the phone stuff I've insisted with some very stern mean conversations. One of my favorites is telling him very strongly in a firm voice that I need to talk to people to be able to keep on helping him so he just has to tolerate it. Give lots of sympathy but set the limits. A lot of his helplessness was needed but a lot was manipulative. Try to be tough but loving and step back from her emotions. You will need to and that's the hardest part of this slow slow slow separation. That we have to stop identifying so very much with their pain or we will be of no help, it is too painful for both of you to be swimming in that sea of grief and fear.
Start small. Acknowledge he fear and her need but also that it is also extremely difficult for you as well and the two of you are in this TOGETHER and just better find a way of working together that works for both of you. Start off while she is still healthier with the idea of some private time for you something you need time for that make sense to her. And get help, any help you can find. You will find that she will be calmer with others when you are not around and when you return she will tell you all the horrors she had to endure. Think of your role changing as she changes. You are now the parent, the one in charge, the one with the weight of the responsibilities and the grief of the situation. You will also speak for reality, that she is not in danger, that she is, safe that she is surrounded love..and also that she does know how to calm herself. Have her take a deep breath and give her something soft to hold on to. Your comfort shirt or blanket or something of yours. There is also the belt baby monitor so she can know you are with her, although i never could tolerate that.
It is not possible to meet your wife's every need. And it is not possible to make her happy. Just reassure her that you love her and will be there for her but also you will fight for the necessary space/friends/activities that you need to stay healthy enough to help her and she will need your help.
This is easier said then done; but must be dealt with repeatedly. There are unpleasant personality changes and you need to change as she changes by holding the boundaries as best you can. But first understand you right to survive this. She will become a tyrant if you let her. This is new and painful to participate in.
Keep writing. You are not alone with this.
Jill
Costa Rica
Well done, Jill. Generous reply. I have seen some of this, not to your extent or georgepa's yet. I will only add that for most of the folks here the symptoms tend to come and go, and some things he used to do that made me crazy have just faded away, to be replaced by new and different challenges. I am trying to learn to see this all as temporary, for better or worse. Love to all, ec
The worst just now is the endless getting up to do things after we've gone to bed. Sigh. Another round just done.
Well said and written Jill! I haven't experienced much of this, there was a time, before S's stroke and PSP, that he would be constantly calling for me to sort what ever he was trying to do, computer would never work etc., and he use to get v(!!!!!) frustrated. Now that's stopped, if he can't get something to work, he just leaves it! V(!!!!!!!!) frustrating for me!!!
Georgepa, you must try and do as Jill suggests. I know it will be hard, but you will have to clever and make her change some one the behaviour. When working in the kitchen, make her come in with you, so you can talk! Go to the hospice, they will help. S is starting soon and I have already been told that they are there for me as well, it won't be the first time they would have come across this problem! I take it you have separate rooms, make yours more of a sitting room, so it becomes your safe haven. Put an armchair, telly, kettle, wine chiller, whatever you need, in the room.
Most of all don't dispair! Like everything with PSP, the symptoms move on, soon (unfortunately) you will look back at this and say " if only". Remember those first awful weeks with your new borns, none of us thought we would survive, but we did, give anything to be back there now!!!!
What's the saying? " when things get rough, the tough getting going". You can do this Georgepa!
Lots of love
Heady
And I also totally agree with Jill although I don't have any regular help at the moment. My strategy is to have friends come and stay to help. They used to come just for holidays now they come and fit a bit of help into their vacations. Chris isn't as clinging as Jill's husband or your wife but prior to PSP he wasn't clinging at all. Currently we have a friend here from Ukraine who will stay till 20 December so next Saturday, 14th, I will fly to Istanbul for a whole day off! First one since late June when I also had a day in Istanbul for my birthday. I have a very close female friend there with whom I spend the day and it is absolutely marvellous to be free. I get quite giddy! That friend will visit in January then we'll totter through till March with local friends helping. I envy Jill her in-house help but have not yet managed to organise anything like that. However, my system works for us. C goes to bed 9.30 - 10pm and once he's settled I stay up for another hour or so and knit, read, go on-line and that is also very good in terms of winding down also go to bed. We now have twin beds on opposite sides of the room with lots of space available in case he gets up in the night so he can fall with minimal damage to himself or anything else. Get your boundaries set before you also lose your health.
Oh Yes,Des so often asks why I left the room after he fell asleep.A year ago he took an insufficient overdose,I looked up the symptoms of overdose which were shallow breathing he was deeply snoring so I waited not wanting paramedics or for him to be put in a psych ward, next day he was fine I felt like death.Since he has said when I sound weary he feels he should die and leave me to have a life.I now try, but not always succeed, to sound happy to come to his calls.He used to love music but now he seldom listens to radio3 which was his favourite,he cannot read and conversations are really difficult for both parties.He also hates bright sunlight so when it is bright and I want to take him to a park or for a pretty drive somewhere he refuses.
I have found if I take a lot of time over the "morning" wash/shower with him he settles better for the rest of the day.(I say morning but nowadays it is often early afternoon)
He can still eat normal food and as the only real pleasure left I make sure he gets what he wants when he wants it (he has not got a taste for real luxury food) It is such a blessing to come here and moan friends and family feel they should do more if I say something to them but they all have their own problems.love to everyone in this same boat! P
I hear ya we are all in the same boat it is crappy
Hi Georgepa, I can't add much what others have said. Colin was never clingy before PSP but called for me constantly once he realised he couldn't get up without falling down. Every time someone phoned he needed the toilet or raised his rise recliner and although he is much further down the line now he still doesn't like being alone. When he could still speak I asked him why he constantly calls me and he said he was scared of being by himself. I felt like you describe. He resisted the hospice initially but I was at the end of my tether and told him if he wanted to be cared for at home, I had to have time off this full time job. I told him I still loved him dearly and gave him lots of hugs but said I am not the saint some folk said I was and needed time to myself. I bought a baby monitor with two cameras and told him I would always be with him, even if in a different room. As I can press a button and speak to him through it, it has reassured him a bit.
I took him to the hospice and leaving him was awful, I came out in tears like I did when the boys first went to play group or the dog went into kennels for the first time but each week it got easier. After a couple of weeks I asked him if he enjoyed it and he said he did it for me. He has been going for over a year now, sleeps when he has reflexology, said he likes the "gathering", a Christian/ spiritual meeting and pats the dog when it visits. I also got in touch with crossroads. In Kent it is free and he has two sitters a week, 4 hours each time and it is wonderful. Again I didn't give him a choice and told him it was for me, not him. Initially they would play cribbage with him or chat but now he sleeps most of the time they are here but I can get out.
Unfortunately as the PSP has taken over more, the challenges are different but even now Colin hates me being on the phone. Only yesterday someone phoned me. She asked how Colin was and I told her he was OK and I was watching him through the monitor. She asked me if I was free on a certain date and I turned to look at the calendar. When I looked back at the monitor, the chair was empty. He had tried to get up and had fallen, his face landing on the wheel of his walker. I dialled 999 as his neck was at a strange angle and it arrived while I was still talking to the emergency call centre. He is OK but has a large bruise from his chin to his ear and a black eye. Life is never dull is it? Very challenging but never dull.
Time to ourselves is a must so sometimes we have to be cruel to be kind. I know if I hadn't got help when I did, I wouldn't be looking after him now. I did it alone for 2 and a half years and much longer I would have broken completely. Of course it is still very hard being a carer but now I do have a life along side PSP.
I hope you get more help very soon, before you are potty.
Nanna B
I'm sure it's fear that leads to this particular behaviour. It's difficult to imagine what it must be like to gradually lose control of one bodily function after another and yet be fully aware of whats happening. It's scary enough choking on a piece of food at any time, knowing this is more likely than not must make mealtimes a nightmare. Feeling dizzy all the time or every time you move, having a limb that doesn't seem to belong to you or jaws that clench tight without you being able to stop it. Any one of these symptoms would be troubling having them all at once must have been terrible.
In my wife's case she always wanted me to go to bed at the same time as her and I always found excuses to go later so I could have some 'my time'. I tried to set limits I could live with for an expected 7 years; it was much shorter. What to do for the best is so hard to get right and I endorse the very good advice that the contributors have given with one minor caveat, please give your wife as much 'putty' as you can manage, for as long as you can manage, without going 'potty'.
Kindest regards, Jerry.
Georgepa I am having the same problems as you apart from when I am on the phone he seems to accept that, but he calls me incessantly during the day and night when he awakens. If I go into the kitchen to prepare a meal he often wants to come with me just so he is not on his own.He cannot read or see the television but listens to the dialogue or has a CD in his personal CD player.I was very surprised that Eddie went to the hospice from 10am to 3pm and said he enjoyed it, having a massage to his hands and "chatting" to his assigned buddy who was with him during the time and helped with meal time.He has agreed to go back next week and understood how good it was for me to have space of my own and I told him I missed him when I was away.
It may work if you stay with your wife for a while as they offer the carer massage therapy and that would do you good. I am going to take them up on the offer.
The carebed has arrived but the noise the plastic mattress makes is unbearable for me let alone Eddie and I am in the next room. I have been told to 'give it a try', any suggestions?
I was not given the option of a hoist as I can still manage to get E into bed from the wheelchair with the turner,will be getting one for upstairs as well,good job I have the lift to take it upstairs it weighs a ton.
Georgepa try and get a visit to the hospice initially, they are all so kind and friendly it would certainly do you good and be a relief to know she is well cared for.Eddie goes to Tiverton.
Hope you can sort something out . Good luck.
Thanks one and all for the wise words and empathy- and for taking so much time to respond . One great comfort to me is that you all appear to have stayed remarkably sane despite the adversities you have and are facing - very encouraging . And Pippalina we too would be going to Tiverton so perhaps we will meet which would be nice .
I have taken a deep breath listened to what you have all said and stepped back so once again -thanks just what I needed .
Hi Georgepa, none of us are sane, but again none of us are being dragged away by the men in white suits! We ALL are just coping, just like you are! Please, please get in contact with the hospice and get your wife in to their day centre. Even if you have to go every time, it's bound to do some good, to one of you, if not both!!!
Lots of love
Heady
I want to move to UK...sounds like you have great services and care...USA, bless them, care very little in my State, Massachusetts for the old ones...we don't consume enough or pay enough taxes to matter...just a drain on resources and money used better to make wars so that other people can make more money and on and on. Maybe things have changed since we left but I think it is worse. If you are extremely poor there is help,..or if you have transferred all your property and money at least 10 years ago ....but.....
This service we are talking about is a charity. It's free and nothing to do with our health service and you are right, it's brilliant. We haven't even started yet, but already I KNOW they are there to help us! (And they have heard about PSP! How's that for a novelty!)
Lots of love
Heady
Who ever thought that I was suffer for services envy?
Jill
I think we suffer from that little problem! Everyone thinks our NHS is wonderful. It sucks!!! Costs US the tax payer a fortune, the doctors etc., think they are up on a pedestal and we have to bow and scrape to them, because we get the service for free(!!!!!!!!) have to get in a queue for everything and be grateful for what ever lousy service they decide to hand out. Can't vote with our feet, if the doctor is crap, just got to smile and thank him for it, else you will be discharged! Nobody is treated with respect, just cattle fodder, 'cause they would rather be out on the golf course spending their huge salaries than earning it!!! Most of the doctors work part time, so seeing the same doctor twice, is almost unheard of. Just what you need with a disease like PSP, because you keep having to explain, of course it goes in one ear and out the other, because they know they will never see you again, so what difference does it make, if they learn anything about you! I could go on and on and on and on, but I don't want you to think I'm bitter and twisted about our wonderful health care!!!!!
Lots of love
Heady
I have to say Heady that our experience of the NHS has ben not as bad as yours has been .GP very caring - Neurologist was considerate and gave us a lot of time and the geriatrician who made the original diagnosis was good too -so we have been lucky on that score - long may it last .
I'm afraid our GP is young and never heard of PSP, tries to pretend he knows it all, but it's pretty obvious he hasn't a clue, our PSP co-ordinator has spoken to him and although she was very polite, she did hint that my views were right. I don't mind that he is young and never heard of this blasted disease, who has? But not to read up or even try and learn, that I can't forgive. While he is at our practice, he will have a PSP patient,, so he ought to know about the disease.
Our consultant, while he seems very thorough, had never sat down and explained about PSP, just told us to Google it!!! So no, I do not have a good opinion of our health service! I won't even go into the problems we had, when S fell and broke his wrist!!!!
All I can say, is thank god for this page, I wouldn't have a clue what was going on!
Hope you are having a better day.
Lots of love
Heady
So sorry about your GP that's disgraceful. Of course he should brief himself and your consultant sounds as if he is an arse .Some do seem to think they are God and patients are an inconvenient necessity ! A s you say thank God for this page because you are right there is more information and help here than anywhere else .
Today ? well slightly better than the last few days but still early - a lot can happen between now and bedtime !!
All the best Georgepa
Heady,
Yes it is the same in US and Costa Rica where we have to pay the Caja the social security health care. It also is horrible..we pay $140 a month to stand in line or wait months and months for an appointment. The doctors get paid huge salaries and are as you describe. But it is FREEEEEEEEE!!!! big deal, if it's bad. The medicines are old and made in India or Mexico. The US Medicare A, B, C, and D,...probably the most complicated system on earth cost us $380 a month but still have to pay co-pay when use it. Now the fun part is we cannot use it anywhere but in USA. BUT if we don't pay for it every month even if living abroad we get a penalty charge which never goes away, added to the base fee, if we want to use it again. I finally canceled it. Cannot afford to pay for health care we don't use.
The neurologists we see here is private pay. Costs $100 an appointment!! (poor country?). And the behavior is the same as doctors everywhere. But I am a pushy Gringa, they hate me. I had to write a formal report, giving the tests, and my recommendations, and two articles that supported my report plus picture of my husband after one of his falls. That got attention but also the doctor was not to be worked with again.
I finally just tell the doctors that I am a physician and do know some things. That tends to work well and they don't know enough English or have time to question that.
Maybe it is all just too expensive with everyone wanting big salaries and pharmaceutical greed. To say nothing of the costs of the bureaucracy. What is the answer? Faith healers? Snake handlers? Lourdes? Shaman healing? ?????
Since nothing much helps. Or maybe the answer is to have a doctor in the family. my mother encouraged me to marry a doctor, maybe she knew something.
Jill
Jill I think the answer is for us all to pool our resources and buy an enormous house/estate and employ our own staff and only allow in people with PSP and their carers and take things in turn to help each other and have an enormous party every week after everyone has been put to bed .( we would need somewhere with a very big wine cellar ) and when we all die we leave everything to the estate to keep it going for future generations of sufferers .Actually a complete island would be good with a temperate climate- know any multi millionaires ? We once worked fro one called Rami Koch in Turkey I could try tapping him up for a donation ! I think he has a bit to spare . Patz might know of him Georgepa
I'm in!
Dudley Moore, famous rich person, died of PSP maybe he left a foundation??? Really worth a look. I would work on your board of directors , and also we could have at least one really good bake sale. And of course the party a week sounds very good to me too. Maybe we could start small just with a party a week?
But seriously wasn't there something on the news a while ago about a village that was entirely for Alzheimer's patients? I can't remember what country but I think Eastern Europe, maybe.
Jill
Costa Rica
Georgepa...that,s one hell of an idea...it could be done .,after 11 years with Madeline on this road,I love the wine cellar thoughts,we could all take a day spent in there while another member cares for our loved one...sometimes it takes dreaming to get through the day,best regards,Rollie
That's the plan Heady- they are making contact next week and I am going for it regardless especially after what everyone has said . I am not sure if I didn't see a man in a white coat round the corner a couple of days ago but I think he has gone now !
I've heard that you can out-run them.
Jill
Hi im new on here, my father has psp and has for at least 4 years i know of, i remember dad goin through this stage which to me seems they are frightened as to what is happening as they dont understand why this is happening,
Or what is happening to them put your self in their shoes, wouldnt uou want to be close to your loved ones?? The ones u are close to and feel very secure with this is the reason why they appear to be so needy. Fact is they havent got a clue how to deal with things they are feeling, Their brain is shutting down they no longer have the ability to express without anger!! I have done a hell of a lot of studying the brain and my father plus countless hours of research, what are your loved ones previous back grounds i am 80 % sure this disease is caused through a nervous breakdown left untreated which causes post traumatic stress syndrome left untreated eventually death of the brain (psp) through trauma,i think this starts in the coreleous locus in the brainstem a severe norepinephrine defiency which can cause nervous breakdown as the body is under nourished we are made of 100% nutrients. When i state left untreated this ment that the individual faces it alone and is to proud to seek help fast forward years of torment and torture psp is the answer. Dad was becoming unresponsive and in his own world i have self medicated him with a number of things for the last months and hes showing good progress talking again, alert, smiling, also significant eye change not as much verticle gaze and less weeping of his eyes, i hope this can give you a clearer as to what is happening to your loved ones.... Victoria
Can't say that the nervous breakdown seems to add up in my wife's case but I would be interested to hear what medication your dad is on .
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